Post Transplant Day 10

Today was a pretty good day.  Benjamin is pretty much completely off pain meds!!!  Hurray!

In the last 36 hours he’s probably only had two doses.

He’s walking a lot and he’s moving around a lot better.

He is determined to get those intestines moving, whatever it takes.

Tomorrow is the second biopsy of his new small intestine to check for rejection.  If all goes well he might get to have some clear liquids.  The thought of this really excites him.

Todays the quote of the day comes from one of Ben’s surgeons instead of Ben.

Quote of the day from Dr. Fugiki: “You look Great!”

Look whose sitting Indian style.  This is good!

Ben and Dad!

 He can even hunch over.  All good things when you have a incision the size of his. 

Proof those abs are healing and getting stronger. 

The left arm is no longer wrapped and almost back to normal size. 

He’s becoming an overachiever on the walking! :-)

Today was Valentines Day!  And even though we are spending our days in a hospital and most often in shifts so not together, my husband still managed to get me my favorite thing for a Valentine surprise!  I’m so blessed to have him as mine!

This beautiful sunset ended our good day!

Post Transplant Day 9

Benjamin and his 7 week old nephew also his namesake, Declan Benjamin.

They are both in the hospital, both with tubes on their faces.  Also Ben looks good sitting up in a chair.

Today was a win-win for Benjamin!!  They were able to successfully remove the blood clot from his neck/chest and they did not need to put a stent in his vein.  They also did not remove the Hickman. They were able to remove the clot and leave the Hickman in plane. Win #1!!

Then this afternoon he was able to have his NG tube removed and that got the biggest smile I’ve seen on his face on over a week! Win #2!!

Quote from Ben: “That feels incredible!”

Little Declan is improving as well. Thank you, thank you for all the prayers, they really are working!

Post Transplant Day 8

A lot has happened for Benjamin today.

They did his first contrast study.  They had Benjamin drink contrast and then took a series of x-rays to see how things were moving through the stomach and small intestines.

The bad news...

Things were not moving.  This means there isn’t very much motility in the new organs yet.

It’s not totally uncommon.  Pain medication can slow the intestines.  It sometimes takes a little while for them to wake up after a surgery like this. 

We’re hoping the less pain medicine he takes and the more he is up and moving the motility will increase until its normal.

They did an Venogram on his left shoulder, chest and arm to check on the blood clot.

The blood clot is located around his Hickman line.  The Hickman is his central line that he has had since we first got here to Ohio, they replaced his port-o-cath with it. This is going to require a two hour procedure tomorrow where they go in through his jugular and pull out the Hickman and then a process to keep that vein from collapsing on itself and remove the blood clot.  It is possible they may have to put a stent in the vein depending on how things go. 

And to add icing on the cake... We just found out our 7 week old grandson has to be admitted to the hospital for RSV.

More prayers for Benjamin that the procedure on his veins will be successful and that motility will return to his organs.  Also prayers for our grandson and for our family would be so greatly appreciated.  We truly believe in the power of prayer and we know that miracles happen and blessings come through those prayers. 

Post Transplant Day 7

Gripper socks, compression wraps, and IV tubes are a regular part of our day right now.  I can’t keep track of all the medications they run through his multiple IV lines at any given minute.  

Today was a good day, no bumps in the road today.  They’re still treating and watching the blood clot in his left arm.  He’s breathing good and walking a few steps farther each day.  I am lucky and blessed to have Linc here so we can tag team being with Ben 24/7 And still get rest.

Tomorrow’s a big day, Bens going to drink contrast and they’re going to take images to see how the new organs are doing and how things move.  

It’s been a week of miracles! Prayer is a powerful thing, and I can’t say enough how grateful we are for all of those being offered in our behalf.  We appreciate all the love and support of so many friends and family!

Ben’s quote of the day: “I feel like I have a club for a left arm.”

Post Transplant Day 6

 

Today Benjamin made it out of the room!!  

He walked about 10 steps into the hallway.  In the picture if you look just behind him you can see his room is set back from the hallway about 5 feet. 

This is the first time he’s made it out of that space.

He also had his first biopsy of the small intestine and there were no signs of rejection!!  Happy Day.  

This was excellent news!  We know this doesn’t mean he wont ever have some rejection it just means there isn't any right now.  I’m taking that as a win!

The bad news is his left arm has been very swollen.  They finally did an ultrasound on his neck and arm today and discovered that he has a blood clot.  They put him on heparin to treat the blood clot.  Heparin is a blood thinner, so they are hopping that it doesn’t affect the bleeding he had in his stomach that is currently stopped. 

It’s a Roller Coaster ride we’re on, but it’s one we waited in line for, for a long time, so I remind myself its a blessing just to be on it. 

Ben’s quote of the day: “I’m all sorts of tangled up.”

He’s got a lot of cords and tubes and sometimes it all becomes a tangled mess.

Post Transplant Day 5 and Happy 26th Birthday!

Happy 26th Birthday Benjamin!!

Today was another day of ups and downs.  We had bleeding in the stomach again.  One of his abdomen drains (JP drain) needed an extra stitch or two because it was leaking. This caused an increase of pain.   It was a very hard day of trying to manage pain.  Even through all the pain he still got up to walk twice today. He is so tough!

We brought him in a birthday balloon and then some friends from the singles ward brought him a bucket of fun things to do to help pass the time and some more balloons.  They couldn’t visit him, but it was fun for him to get a few big cards with a lot of birthday wishes for him to read.  One card from the Cleveland YSA and one from the Kirtland Ward. They also gave him a big fuzzy blue blanket which he loves!

The nutrition team sent up his bag of TPN with an Orange Fanta picture taped to it.  They had heard he was craving Orange soda so this was a fun surprise. Not quite the real thing but funny nonetheless!  He also had to have a unit of blood today because of the bleeding from his stomach and a when the unit came up from the blood bank they had attached a birthday card as well. 

The cold wet washcloth on his head has been helpful and soothing when he is suffering with a lot of pain.

For mommy today took a toll.  While driving home I found myself in tears.. its hard to watch one of your kids suffer with pain that you cannot take away.  It’s times like these I’m grateful for my Heavenly Father and my Savior.  I am not alone... they are with me and all will be well.
Ben’s quote of the day: “Can I have a swabee”  He’s referring to the green mouth swabs you wet his lips with.  He loves these, especially since he isn’t allowed an anything by mouth at this time. He asks for them frequently.

Post Transplant Day 4

Today Ben got up and walked about 15 feet and then sat in a chair for 30 minutes.  Not only is this a great milestone, but he did it twice.  We’re still on a constant adjustment to try and manage pain, but it’s improving.  The transition of getting out of bed causes quite a bit of pain. Tomorrow we’re hoping he can a walk a little farther.  He needs to get to where he is getting up and walking 4 times a day.  That is the current goal for now.

Our next major milestone will be the biopsy of his small intestine to check for signs of rejection.  This is scheduled for 1 week post-transplant on Tuesday.  Also... NO MORE catheter.  This made him very happy. 

Ben taking his first walk. 

He went out his room and to the hall, his door is inset a few feet from the hall.

Ben and one of the Doctors from the transplant team Dr. Fujiki on the right.

On the left the Fellow that works with he transplant team, I cant remember his full name its long and Slavic, but his first name Stepan. 

Benjamin continues to be positive.  We’re so very grateful for all the nurses and techs who really try to make him comfortable! 

Quote of the Day: “Like my walker?”